As Nana Turns 65.......

....I face the "elderly" life with tons of hope and joy....

....I believe in hope....because really, what is life without it?

...I'm thankful that my Charleston has a Mama Bear...

....I absolutely love that we live in a world where things can be adapted for him to enjoy life...

....I'm happy that he's able to teach people things from his life....

....It makes my heart happy that he can go into his backyard like any other kid....

....SO freaking thankful that I finally was able to touch him last month....

....I was thrilled to be able to be silly with my daughter after a year of "hibernation"!!!

...the LOVE between these two boys is immense....how lucky are they to have each other?????

Reality Hits

I started this blog a few months ago, then decided I wasn't ready to share what happened. It was a horrible, scary, almost out-of-body experience for all of us. Thankfully, I still have my Charleston. 

There was a virus going around the Goeppert house, and even though they did absolutely everything they could to make sure Charleston didn't get it, he did. We thought he was getting over it when he decided to sleep all day. But, in reality, he was so sick that he became unresponsive.

On their way to the hospital, I got a call to get to Modesto, and I headed out.When I got there, he was somewhat stabilized, but not doing well --- at all. Totally unresponsive. I saw him briefly, then went out to the parking lot and got Cole, so Cameron could go be with Ashley & Charleston in the ER. Cole & I hung out in the hospital parking lot for several hours, having races, seeing who could jump the highest, and anything else I could think of to do with a 2-year-old boy and no toys!!!! He was a real trooper.

Then, I got a text from Ashley, saying that Charleston had to be airlifted to UC Davis Children's Hospital. We were all terrified. My mama heart kicked in and I started praying that God would protect my daughter & grandson, who would be flying in a helicopter - in the dark - with Charleston unresponsive.

Within a few minutes, I saw the helicopter arriving, and let Ashley know. Within a few minutes, another text - "Mom, you're not going to believe this. The paramedic on the helicopter is Josh." Josh is Cole's godfather. He works in Reno - in a different state from where we were!!!! He loves my Charleston. Somehow, Josh had been dispatched to exactly where we needed him that night. I immediately knew that God had His hand on my Charleston, as He always does. 

Cameron and I watched the helicopter take off with its precious cargo. Cam took Cole home so they could get some sleep, and I headed for UC Davis. I arrived around 1:30am, and they already had my Charleston set up under quarantine. Still unresponsive. There is no word that can describe what we were feeling. Maybe terror???? That even seems too soft of a description.

After almost a week in the PICU (under quarantine the entire time), we knew he was going to be okay. There were several days that we honestly didn't know. We just put one foot in front of the other and took life minute by minute. As he opened his eyes the first time, it was AMAZING!!!!!

I saw such strength that week - in all of us. I'm so proud of the family that I have. It's overwhelming sometimes. WE DID IT.

My Charleston got to go home after that experience. But not all SMA kids get to do that, as we've lost a lot of them again this year.

I love you, my Charleston.

Fireman Charleston!!!

Just call him Chief Charleston!!!

Charleston had a visit from Santa Claus, and LOOK WHAT SANTA BROUGHT HIM!!!!! Yes, he brought him his own FIRE TRUCK!!!! And he brought little brother Cole (2 years old) his own ATV!

Charleston continues to reap benefits from the treatment he's getting, Spinraza. So Santa knew that he could drive his own fire truck! Santa dropped by Daddy's fire station, just to make sure that everything would be set up correctly & customized for our Charleston.

SO EXCITING!!!! Santa knew just what to get him!

Here you can see how Daddy helped Santa. Together, they attached a sled so he could lay flat on it.

Posing in front of the Christmas tree, anxiously awaiting Santa's visit.

LOOK!!!! Charleston is giving his little brother, Cole, a ride in his fire truck!!!! That's what big brothers are supposed to be able to do, right???!!!!

NOW, for the best part!!!!

"I just want to ride bikes with you" -

Our most important goal since Charleston was diagnosed is to make sure he LIVES LIFE!!!!! I, as his nana, have been frustrated over enabling him to have a simple joy - riding a bike.

I just recently told Ashley that every Christmas, I donate a children's bike in his honor. It's something that has been important to me, and has filled a small hole in my heart because he hasn't been able to ride a bike of his own.

Now look!!!!!! Charleston has a bike!!!!! And little mama took him for a ride yesterday in their neighborhood!!!! And he LOVED IT!!!!

I found this bike by searching on the internet. Periodically, I've searched bikes for disabled children, to no avail. But a few months ago, something showed up on indiegogo.com - here's the link for any of you that may be interested: Taga Bikes. Ashley contacted the people at the company, and they were fabulous to work with!!!! They made modifications for Charleston, and the bike was delivered last week.

My Charleston is happy, little mama is happy, dada is happy, and this nana is OVER THE MOON!!!!

HOPE. For REALS!!!!!!

Seven years and twenty-three days. "Take him home and love him, there's nothing you can do." "No treatment or cure." For 7 years and 23 days. He's a fighter. Mom and Dad are fighters for him. Our entire family has fought for him. But that's what we've been told, for 7 years and 23 days.

On December 23rd, 2016, my Charleston turned 7 years and 23 days old. TAKE THAT SMA!!!!!

My phone rang at 1:40pm. I was at the Oakland Airport, picking my mom up for Christmas. I knew what it meant, but my mom didn't. I started crying, but this time........with tears of joy. Of HOPE. Of EXCITEMENT. Of THANKFULNESS. I knew what her phone call was about, and it was incredible news that we had hoped and prayed for.

It was Ashley..........."We got it, BABY!!!!" And, for the first time in 7 years and 23 days, her voice was full of JOY.

Yes, we got it, baby!!!!!!! The FDA had just made an announcement --- they released the very first pharmaceutical treatment for SMA!!!!!!!

http://www.curesma.org/news/spinraza-approved.html

This is a drug that has been in the works for years. It is NOT a cure. It is a treatment. So what does this mean for my Charleston?

We don't know. What we do know is this:

The clinical trials have only been performed on babies with Type 1. Has it helped? TREMENDOUSLY!!!! Some of them are walking.

What will it do for Charleston? We don't know, but we are hopeful.

How does it work? Here is a really good, short video that explains it:

http://www.sandiegouniontribune.com/business/biotech/92202909-132.html

So now we wait. AGAIN! Little mama has been busy contacting hospitals, doctors, the pharmaceutical company, the distributor of the drug, CCS, and anybody else that will listen!!!!
We are now awaiting insurance approval. The cost is $125,000.00 per injection. Yes - $125,000.00 for every single shot.

What does it involve?

Charleston has to remain healthy (NO VISITORS)

It will be given to him as a lumbar puncture (in the spine), at a hospital. He'll have 4 shots in the first 45 days, then another one every 4 months. Each one will build on the previous one. We have been told not to expect to see any changes for a year.

Please pray for Charleston. Please pray for Ashley and Cameron, and baby Cole. Please pray for all of us.....for strength, for guidance, and for peace with this decision. Please pray for the families that have lost their warriors to this disease too soon. And please thank God for allowing us to keep this angel on earth.

SEVEN!!!!

December 1, 2009......I became a nana. A beautiful baby boy named Charleston. I melted. My heart was full.

Three months later......"take him home and love him, there's nothing that can be done."

TODAY!!!! December 1, 2016.....that beautiful baby boy is SEVEN YEARS OLD!!!! It's been the fight of a lifetime - for ALL of our family and our friends (those that have stuck around!).

TODAY.....we celebrate. Charleston wanted to go to the beach for his birthday, so mom, dad, and baby brother Cole are at the beach!!!!!

TODAY....my Charleston is in the 1st grade, and has his own robot that attends school for him.

TODAY....my Charleston's favorite thing in the whole wide world is youtube.

TODAY....there IS a treatment for kids with SMA.....and of course, little mama is fighting to get it for him.

TODAY.....he's happy.

TODAY.....he has a little brother to love.

TODAY.....we are blessed to have this little hero in our family. I love you, my Charleston

Miracle League truly is a miracle!

HE PLAYS BASEBALL!!!!

Charleston has been playing baseball with Miracle League. It's an organization that makes it possible for kids like him to be "normal." He's a great player. Daddy (Cameron) assists him by helping him swing the bat......and at the last game, he got a home run!!!!

If any of you want to experience a wonderful, heartwarming thing........find a Miracle Field near you. Or better yet, volunteer! It truly is amazing.

Here are some pictures from his 1st season.

His two biggest fans (besides mom & dad):

Nana

Little Brother Cole